(0)
0 Items £0.00

Struggling to stay calm

13 posts / 0 new
Last post
Charlotte290
Struggling to stay calm

Hi all- 

Sorry- sure I'm being annoying as keep on posting the same sort of things... think it just helps when I write it down maybe! 
I was told over the phone on Friday that I have squamous cell CC.

I had my MRI and am seeing consultant tomorrow evening- I know it won't be 100% accurate without a pet scan (?) but I'm hoping he can give me an idea of staging tomorrow from the MRI?? 
It is taking over my everything worrying! 
I know everyone probably feels this way- but I am so so certain mine is pretty advanced. Looking back at 'symptoms' I've had them for so many years!

sciatica on and off- although- the first time I hurt my back was due to a quad bike incident (I thought) so could be unrelated. Fingers crossed!!!! Loads of other little things that I don't think many people would add together to make cancer!! 
What brought me to getting a very overdue smear was post coital bleeding... and the cancer was seen immediately so I know it's no small problem! 

For the last 2 weeks, I have had the most awful pain in my back- depends on how I sit/lie how bad it is... standing is much better! Some have said it could be my anxiety (which is vicious at the minute!!) but... the pain is so strong- even with all of the pain medication- that surely there has to be some truth to it?? 
It is a strange pain- like a niggling, dull ache with a twinge of burning! Every so often I also get pins and needles in my hands and feet... spreading up my forearms.

My worry is that it is resting on a nerve or something? 
The strange thing is- the pain only started when I started to suspect/worry this could be cancer..... but... it's relentless! 
I am trying every source of relaxation that I can think of, nothing is working! 
I am a complete medical anxiety nutcase- terrified of my own shadow when it comes to doctors- so I am starting to have really negative thoughts about actually being able to mentally deal with treatment! I am the person that worries when I take medication if it makes me feel any kind of different.. that I've had some awful reaction and something has gone wrong! Own worst enemy! 

Has anyone else 'felt' their tumor radiating in their back and still been a low'ish stage? Or... has anyone else truly felt pains like this that turned out to be anxiety driven? I just can't believe that is the case for me as they are so real- and the pins and needles have been happening for a few months. 

Feeling calmer just for typing all of this, to people that completely understand- so thank you.

x

 

 

07.08.20 diagnosed with squamous cell 1b2 cc

16.09.20 radical hysterectomy 

Lisa_xox

Hi Charlotte 

Sorry you find yourself here but be assured the support is there for you.

In my personal experience I didnt really think I had any symptoms until the words you have cervical cancer were said to me. I had never suffered anything like depression or anxiety up until this and honestly I think at times I really lost the plot. Before my staging everything started to hurt, I'd read things and think yup ive felt that or had that for years etc and got really angry at myself for not putting 2 and 2 together. I'd suffered with my back for months and instantly believed it was the tumour when in reality it was more than likely the fact i sat in office for most of my day. The anxiety alone made me feel constantly sick, I couldn't eat, sleep it was almost like the moment I heard the word cancer my body just decided to feel poorly.

In hindsight a week later when I got staged I was stage 1b2, my CC had been caught relatively early and once I knew the plan alot of the feelings calmed.

I'm now at the other side and recovering from surgery and the anxiety still pops its head up but I find myself controlling it alot more now.

What us ladies go through is a complete roller coaster/whirlwind that deep down we believe will never happen to us, and it does get better and things become alot easier to deal with

Hope all goes well tomorrow, Il be thinking of you 

Lisa xx

 

27.05.2020 attended nurse apt due to unable to feel coil strings and slightly heavier than normal discharge

03.06.2020 colposcopy apt

10.06.2020 apt made for results (welcome to cc club)

15.06.2020 MRI scan

18.06.2020 MDT stage 1b2

25.06.2020 apt to meet surgeon and discuss treatment

15.07.2020 radical hysterectomy 

06.08.2020 no further treatment needed, follow up in 3 months

 

Charlotte290

Thank you Lisa-

I am sure you don't feel lucky- but I will be thrilled to be a 1!! 
I have everything crossed- just hope that my gut feeling is completely wrong!! 
I am with you on the feeling sick- the worry is eating me up- I feel constantly nauseous, closing my eyes to go to sleep I get this funny feeling rush over me like I'm going to pass out- it's really scary actually! 
I wake up every morning with a joult and my first thought is always the same- S**t I've got cancer! Just wish I could think about something else, even for a few seconds would be a relief!! My life feels like it's stood still waiting... waiting to hear more bad news and then to go through a horrific time! Trying not to feel sorry for myself, very unsuccessfully! Evenings are by far the worst, daytime I seem to handle it a lot better, but as soon as the darkness comes I'm a mess and more worried! I have upped my anxiety pills and they don't seem to be touching the sides today either. I read all of the posts here, and you- everyone that has come through the other side- I am in awe! Just hope that can be me soon, here to help other new women through.

Just wish the pain would ease up. Need to find my inner strength, I am hoping that will come with knowledge- once I know what I'm really up against I can get my fight on! 

I am sure it's normal to go through such huge ups and downs- one minute I'm feeling- I got this.... I can do this... the next... I'm really not so sure!!

x

07.08.20 diagnosed with squamous cell 1b2 cc

16.09.20 radical hysterectomy 

NightFury

Hi

I was staged after MRI, didn't have PET scan at all.

Good luck and try to stay calm. 

I thought I'd be stage 3 with pain in my groins but ut turned out 1a2 - awaiting lab results to confirm.

Sending you a lot of positives energy 

Xx

Philleepa

I was diagnosed stage 4a nearly 5 years ago and I didn't have sciatica pain or the pins & needles you've described. I had back pain which did go away with meds and I had other symptoms which you haven't described so there is a good chance you are not as far along as you think.

Don't be blaming yourself because your smear was overdue- mine were all up to date and I had been to the GP with my gynaecological problems for 2 years and because my smears were up to date, cervical cancer was never considered!

I was staged by MRI. 

With regards to the drs, they are on your side and want to get rid of this for you, once I realised that, I felt a lot happier - I resented them at first!

The treatment is the esy part, it's your mind you have to convince! Once you are staged and have your plan you will begin to relax a little. 

A lovely lady on here once told me 'it is what it is, you just have to get on with it' and she was 100% right.

 

I hope your appointment brings better news than you are expecting and remember,  all the ladies on the forum are here to offer you support x

Charlotte290

Slept like a baby last night! Have not long woken up (usually a pretty early riser!) can't believe my husband has managed to keep the children quiet and away from me for so long (I have 4!!) the twins (6) are my absolute shadows at the minute! 
feeling calmer this morning- the sleep probably helped that! I think it's just a whirlwind of emotions and likely 'normal' for me to feel as unsettled and up & down as I do. 
Cancer is bloody scary!

Nightfury- thank you- I hope my staging goes well- and the pain turns out to be not too sinister.

Philleepa- I must say... you are such an inspiration to me on here. Everyone is- but... I have read every post you've written, and will always hope to take it in my stride as you seem to have! 
Reading your posts gives others hope....stage 4...such positivity and strength, you've made it seem possible! Plus the fact that you still come back- can not tell you how much that helps us newcomers!! 
whatever the outcome of today- I need to pull myself together, find my inner strength... which is definitely there somewhere!! (In most ways, I am so strong... just not medically (YET!!)) and get this thing gone! 
I am sure my new found power will fizzle on and off today- so any more words of encouragement welcomed... getting a response here is the highlight of my day! It's the only place I am truly honest about my fears and feelings.

My appointment isn't until 6.45pm... leaving me the entire day to think about any new aches and pains... fun!!! 
Did anyone start private and move over to NHS for treatment? Wondering what the next stage will be? I am hoping to be moved over pretty swiftly now- but don't know how it all works to be honest! The one thing private has allowed me is speed (and a drop in my bank account!!!! Yikes!!) as it was only just over a week ago that I had my dodgy overdue smear! I am hoping that the consultant I see today will just move me over to his NHS list? No idea! Don't even know what today is for really... it will be my first proper meeting with cancer specialist- the lovely consultant who did my colposcopy, and called me Friday to confirm the worst isn't oncology. 

Hate not knowing what to expect! MRI and chest X-ray were done last Thursday- so what is the next appointment usually and what does it entail?

Lastly... what is the purpose of a pet scan and why do some seem to have it and others not? 

Sorry for the 10billion questions... total control freak if you hadn't already noticed!!!  
Thank you all!!! 
The neurotic one x

07.08.20 diagnosed with squamous cell 1b2 cc

16.09.20 radical hysterectomy 

FeelingTheFear

Hi charlotte

So glad you had a good night's sleep!

As I've said previously, the next meeting after your scans is usually done after the multi disciplinary team meeting and will be the start of your treatment plan discussion. The multi disciplinary team (mdt) is a meeting of gynaecologists, oncologists, radiologists, and they all discuss each case from their perspective backgrounds and agree on an initial staging and treatment plan.

Your appointment today will depend on whether they've had this keeting yet or not, hopefully they will have done 

In a previous post I explained that the PET scan shows how the cells in the body are functioning. You are injected with a radioactive sugar. Cancer cells eat up this sugar very rapidly and can then be detected by the scanner, as the radioactivity will be focused in areas of uptake for that sugar. This can tell them which cells are malignant. I have no real idea why some people are offered the PET scan and others not. It could be the policy of the trust where you live, as the PET scan is very expensive and costs several thousand £ a go, so perhaps they only invest that money in patients where they feel it is likely to provide a benefit at staging, ie for patients with larger tumours. Patients with small 1a size squamous tumours are highly unlikely to experience distant metastases and the MRI would show any unusual enlargement of nearby organs and tissues. 

Your team know what they are doing and they are working to get this fixed for you. All you need to focus on is your headspace 

You may find it helpful to write a list of questions in advance for your appoibtment later so you can make sure you get all the answers you need from your team :-)

Feb 2020: smear = high grade dyskariosis

March 2020: biopsy = CIN3

April 2020: lletz = cervical cancer stage 1b1 (1b2 on new FIGO)

May 2020: radical hysterectomy and lymphadenectomy. NED!

September 2020: first follow up. NED!

Jazza
Jazza's picture

I had an MRI and a PET scan.  I don't know why I had a PET scan - maybe because of an initial diagnosis of stage 1B1?   Both scans were arranged at the same time on the basis  of 'a squamous cell carcinoma which does not appear to be invading beyond the cervix'.   After the scans I had a pelvic lympadenectomy followed 11 days later by a radical hysterectomy.  At hysterectomy the  histology showed my cancer was stage 2A1 measuring 3.8cm.  All my diagnoses and treatments were under the NHS. 

x

  • Feb 04:  (age 47y) Smear test normal
  • Stopped going for smears!
  • Summer 16: persistent watery yellow vaginal discharge
  • Dec 16: PMB
  • Jan 17: Hysteroscopy under GA for ?fibroids - abnormal cervix observed -multiple biopsies taken, 1B1 (1B2 on new FIGO) squamous cell cc diagnosed - confirmed by MRI/PET scans
  • Feb 17: pelvic lymphadenectomy - nodes negative, Da Vinci radical hysterectomy- close anterior margin/LVSI/PNI, restaged to 2A1 (2A1 on new FIGO)
  • Apr/May 17: 6x chemo, 25x external radio, 2x brachy
  • May 20:  NED.  Side effects notably hypotonic bladder since hysterectomy - ongoing ISC, unilateral lymphoedema lower abdo/groin/leg/ankle/foot
Charlotte290

Thank you both- sorry I am so repetitive... feel like I want/need constant reassurance and this is the only place I will accept it from! 
Where is the fast forward button!! Want to be a few months ahead and all done!! Wouldn't that be a luxury!! 
Don't think any of you have any idea how much you all help me!! 
Charlotte x

07.08.20 diagnosed with squamous cell 1b2 cc

16.09.20 radical hysterectomy 

FeelingTheFear

Dont worry charlotte! Even the longest day is only 24hrs long :-) you'll get through x

Feb 2020: smear = high grade dyskariosis

March 2020: biopsy = CIN3

April 2020: lletz = cervical cancer stage 1b1 (1b2 on new FIGO)

May 2020: radical hysterectomy and lymphadenectomy. NED!

September 2020: first follow up. NED!

Charlotte290

After all the worry... I am amazed to be a 1b2 grade 3 girl. 
Cried. Cried a lot! First time I've been emotional, poor guy must have thought I was completely bonkers! 
At first I was sobbing because I was so bloody relieved, I really, truly believed I was completely riddled: cannot put into word how sure I was. I could literally feel it in my body! 

Then- and please forgive me, because I know I am 'lucky' but then, I was crying because I'm terrified. He believes it'll be a radical hysterectomy, they're going to look a little more closely at my MRI due to the strange back pain (which is still very much there) so don't know 100%... but I am absolutely terrified of an operation! I know neither option is easy by any stretch... this is a personal fear, always has been my biggest fear actually! The thought of me willingly walking into a hospital to be put to sleep and operated on??? I just can't get my head around it! Of course, rationally I know I have no choice... but it doesnt make it any less scary for me!!! Recovery too- I have a full on phobia of medical dressings and someone taking them off- (I know... too weird!!) no idea why! 
Not sure how I am going to do this- but I know I must... so will just have to go through the motions I guess. 

Any tips from other worriers welcomed! 
Thank you all for being my 'rock' through this- the consultant was amazed at how knowledgeable I was, I said it's all from here and he smiled... said best place to be and I couldn't agree more! 
Charlotte x

07.08.20 diagnosed with squamous cell 1b2 cc

16.09.20 radical hysterectomy 

FeelingTheFear

just a quick one charlotte - really glad to hear the news that your cancer does not look to have spread and that it is expected to be operable. I think we all dread being operated on, its totally understandable but really not as awful as your imagination makes out 

Regarding the dressing, I insisted on removing my own dressing, as I feel a lot better when I'm in control of a procedure. The nurses were quite happy with this and started offering me to do various things for myself, they would just stand there and offer advice or tips. I only had to change it once, the 2nd time I took it off, it was good enough underneath to leave the dressing off :-) 

Take a moment to breathe in the relief that your self diagnosis was wide of the mark, and schedule worrying about surgery for a bit later on! You can do this! xXx

Feb 2020: smear = high grade dyskariosis

March 2020: biopsy = CIN3

April 2020: lletz = cervical cancer stage 1b1 (1b2 on new FIGO)

May 2020: radical hysterectomy and lymphadenectomy. NED!

September 2020: first follow up. NED!

NightFury

Great you feel relieved! 

I am a week into my recovery now. Time flies this is all I can say ;) even though I had a bumpy road (I've catched bladder infection and my catheter was put in for another week and I am still inpatient) but honestly I feel good. 

Belly isn't swollen any more and I am even able to put my socks up!

Did they tell you which surgery you'll be getting? Open or laparoscopic? 

I had laparoscopic one, and had no dressings at all. I have 6 holes, dissolving stitches and glue on top. Week after op wounds look awful but are dry and healing fast. 

I would strongly  advise you to let them know about you anxiety and fears as I hold this back thinking I'll be grand - so on the morning on my operation I went in at 7am, sat till 1pm and then was told to put the gown on. Automatically I started to cry and could not stop, I cried all the way to the theatre, then I cried on the table, shaking like maniac from the stress and then EVENTUALLY they gave me a wee injection to calm me down. Last thing I remember is the spinal injection and I woke up in the recovery suit. Nurses asked me to move my legs and were pinching me to see if everything is OK so I told them to "give me a break". ;)

Honestly, it was a horrible experience but as a lot of the ladies mentioned, every 24hrs you see an improvement. 

If you want more details I can PM you ;) 

All the best, at least now you know what is going on :) 

 

More Information

Cervical cancer